Nonprofit · EIN 41-2073220
THE ASSOCIATION FOR FRONTOTEMPORAL DEGENERATION
Tax-exempt · KNG OF PRUSSA, PA 19406
Financials
| Year ended | Form | Revenue | Expenses | Net income | Total assets | Liabilities | Net assets |
|---|---|---|---|---|---|---|---|
| June 30, 2025 | 990 | $14,420,554 | $11,559,795 | $2,860,759 | $60,143,025 | $3,243,046 | $56,899,979 |
| June 30, 2024 | 990 | $13,139,120 | $11,526,939 | $1,612,181 | $53,971,673 | $3,390,530 | $50,581,143 |
Financial details: 990 for the year ended June 30, 2025
Revenue
- Contributions, gifts and grants
- $12,345,385
- Program service revenue
- $302,568
- Investment income
- $1,935,108
- Net gain from sales of assets
- $588,231
- Net income from fundraising events
- -$301,011
- Other revenue
- -$162,507
Expenses
- Grants and similar amounts paid
- $1,942,719
- Compensation of officers, directors and key employees
- $651,499
- Other salaries and wages
- $4,615,773
- Salaries, compensation and benefits (total)
- $6,363,009
- Professional fundraising fees
- $75,000
- Accounting fees
- $23,878
- Occupancy
- $252,906
- Travel
- $320,576
- Depreciation
- $9,107
- Program services (functional)
- $9,461,273
- Management and general (functional)
- $464,967
- Fundraising (functional)
- $1,633,555
Balance sheet and other
- Total assets, start of year
- $53,971,673
- Total assets, end of year
- $60,143,025
- Total liabilities, end of year
- $3,243,046
- Net assets, end of year
- $56,899,979
- Land, buildings and equipment
- $15,447
- Publicly traded securities
- $40,186,544
- Net assets without donor restrictions
- $45,547,179
- Net assets with donor restrictions
- $11,352,800
- Gross receipts
- $24,754,249
- Employees
- 64
- Volunteers
- 605
- Year formed
- 2002
- State of legal domicile
- PA
From the e-filed returns the IRS publishes as XML (latest three processing years; amended returns replace the original). PDF copies at the IRS.
Officers, directors and key employees
As listed on the 990 for the year ended June 30, 2025, highest compensation first.
| Name | Title | Hours / week | Compensation | Other / benefits |
|---|---|---|---|---|
| SUSAN L-J DICKINSON | CHIEF EXECUTIVE OFFICER Officer | 36 | $320,026 | $29,988 |
| MITCH APPLESON | CHIEF OPERATING OFFICER Officer | 38 | $255,015 | $28,570 |
| PENNY DACKS | SR DIRECTOR OF SCIENTIFIC INITIATIVES Highest-paid employee | 30 | $226,491 | $17,572 |
| SHARON DENNY | SR DIRECTOR OF PROGRAMS Highest-paid employee | 40 | $174,174 | $26,116 |
| PHILLIP JOHN WEICHEL | SR DIRECTOR OF ADVANCEMENT Highest-paid employee | 40 | $157,933 | $42,270 |
| PETER WITZLEB | DIRECTOR OF IT Highest-paid employee | 40 | $168,866 | $6,033 |
| SHANA DODGE | DIRECTOR OF RESEARCH ENGAGEMENT Highest-paid employee | 40 | $152,910 | $15,035 |
| RITA CHOULA | CHAIR Trustee or director, Officer | 4 | $0 | $0 |
| GAIL ANDERSON | VICE CHAIR Trustee or director, Officer | 4 | $0 | $0 |
| VALERIE SNOW | SECRETARY Trustee or director, Officer | 4 | $0 | $0 |
| JULIE KELLY | TREASURER Trustee or director, Officer | 4 | $0 | $0 |
| HALIMA AMJAD | DIRECTOR Trustee or director | 3 | $0 | $0 |
| KYLE BIRMINGHAM | DIRECTOR Trustee or director | 3 | $0 | $0 |
| HELEN-ANN COMSTOCK | DIRECTOR Trustee or director | 3 | $0 | $0 |
| JOE ESPOSITO | DIRECTOR (EFF 5/3/25) Trustee or director | 2 | $0 | $0 |
14 more people on this return
| Name | Title | Hours / week | Compensation |
|---|---|---|---|
| JILL GOLDMAN | DIRECTOR Trustee or director | 2 | $0 |
| KRISTIN HOLLOWAY | DIRECTOR Trustee or director | 2 | $0 |
| SHOSHANA KRILOW | DIRECTOR Trustee or director | 3 | $0 |
| JOSEPH MARQUEZ | DIRECTOR Trustee or director | 2 | $0 |
| LENN MARQUEZ | DIRECTOR (EFF 5/3/25) Trustee or director | 3 | $0 |
| KATHY MELE | DIRECTOR Trustee or director | 3 | $0 |
| DON NEWHOUSE | DIRECTOR Trustee or director | 2 | $0 |
| GIRISH PATANGAY | DIRECTOR (EFF 5/3/25) Trustee or director | 3 | $0 |
| DAVID PFEIFER | DIRECTOR (EFF 5/3/25) Trustee or director | 3 | $0 |
| KRISTIN SCHNEEMAN | DIRECTOR Trustee or director | 3 | $0 |
| MARG SUTHERLAND | DIRECTOR Trustee or director | 2 | $0 |
| ABRAR TANVEER | DIRECTOR Trustee or director | 2 | $0 |
| KIM TORRES | DIRECTOR Trustee or director | 2 | $0 |
| JARY LARSEN | DIRECTOR (THRU 5/4/25) Trustee or director | 4 | $0 |
990 for the year ended June 30, 2024: 27 people
| Name | Title | Hours / week | Compensation | Other / benefits |
|---|---|---|---|---|
| SUSAN L-J DICKINSON | CHIEF EXECUTIVE OFFICER Officer | 36 | $299,604 | $27,277 |
| MITCH APPLESON | CHIEF OPERATING OFFICER Officer | 38 | $239,433 | $30,583 |
| PENNY DACKS | SR. DIRECTOR OF SCIENTIFIC INITIATIVES Highest-paid employee | 30 | $215,668 | $15,410 |
| CHRISTINE ROGERS STEVENS | DIRECTOR OF FINANCE (THRU 9/24) Highest-paid employee | 36 | $182,806 | $25,570 |
| SHARON DENNY | SR. DIRECTOR OF PROGRAMS Highest-paid employee | 40 | $163,623 | $23,818 |
| PETER WITZLEB | DIRECTOR OF IT Highest-paid employee | 40 | $162,345 | $5,177 |
| BENJAMIN FREEMAN | DIR OF DEV & COMM (THRU 1/24) Highest-paid employee | 40 | $160,117 | $5,097 |
| KIM TORRES | CHAIR Trustee or director, Officer | 5 | $0 | $0 |
| RITA CHOULA | VICE CHAIR Trustee or director, Officer | 5 | $0 | $0 |
| JULIE KELLY | TREASURER Trustee or director, Officer | 4 | $0 | $0 |
| GAIL ANDERSON | SECRETARY Trustee or director, Officer | 4 | $0 | $0 |
| JILL GOLDMAN | DIRECTOR (EFF 5/4/24) Trustee or director | 2 | $0 | $0 |
| HALIMA AMJAD | DIRECTOR Trustee or director | 3 | $0 | $0 |
| HELEN-ANN COMSTOCK | DIRECTOR Trustee or director | 3 | $0 | $0 |
| SANDRA GROW | DIRECTOR (THRU 5/4/24) Trustee or director | 3 | $0 | $0 |
| KRISTIN HOLLOWAY | DIRECTOR Trustee or director | 2 | $0 | $0 |
| KYLE BRIMINGHAM | DIRECTOR (EFF 5/4/24) Trustee or director | 2 | $0 | $0 |
| SHOSHANA KRILOW | DIRECTOR Trustee or director | 2 | $0 | $0 |
| JARY LARSEN | DIRECTOR Trustee or director | 4 | $0 | $0 |
| JOSEPH MARQUEZ | DIRECTOR Trustee or director | 2 | $0 | $0 |
| KATHY MELE | DIRECTOR Trustee or director | 4 | $0 | $0 |
| DON NEWHOUSE | DIRECTOR Trustee or director | 2 | $0 | $0 |
| KRISTIN SCHNEEMAN | DIRECTOR Trustee or director | 3 | $0 | $0 |
| MARG SUTHERLAND | DIRECTOR Trustee or director | 3 | $0 | $0 |
| ABRAR TANVEER | DIRECTOR Trustee or director | 2 | $0 | $0 |
| VALERIE SNOW | DIRECTOR (EFF 5/4/24) Trustee or director | 2 | $0 | $0 |
| DAVID PFEIFER | DIRECTOR (THRU 5/4/24) Trustee or director | 2 | $0 | $0 |
Address and contacts
- Address (IRS master file)
- 2700 HORIZON DR STE 120, KNG OF PRUSSA, PA 19406-2726
- In care of
- % BETH WALTER
- Principal officer (990 for 2024)
- SUSAN L-J DICKINSON, 2700 HORIZON DRIVE 120, KING OF PRUSSIA, PA 19406
- Signed the 990
- SUSAN L-J DICKINSON, CHIEF EXECUTIVE OFFICER
- Phone
- (267) 514-7221
- Website
- WWW.THEAFTD.ORG
- Return prepared by
- EISNER ADVISORY GROUP LLC
Mission
PROMOTE AND FUND RESEARCH INTO DEVELOPING BETTER DIAGNOSTIC PROCESSES, THERAPIES, AND CURES FOR FRONTOTEMPORAL DEGENERATION (FTD); PROVIDE INFORMATION, EDUCATION, SUPPORT AND ADVOCACY TO PERSONS DIAGNOSED WITH FTD, THEIR FAMILIES AND CAREGIVERS; (CONTINUED IN SCH O) EDUCATE PHYSICIANS AND OTHER HEALTH PROFESSIONALS ABOUT FTD AND HOW TO IMPROVE PATIENT CARE; BRING ABOUT GREATER PUBLIC AWARENESS OF THE NATURE AND PREVALENCE OF FRONTOTEMPORAL DEGENERATION AND THE NEEDS OF THOSE WHO ARE COPING WITH IT; ADVOCATE WITH PUBLIC OFFICIALS TO PROMOTE PUBLIC AND PRIVATE PROGRAMS THAT PROVIDE APPROPRIATE, AFFORDABLE AND HIGH-QUALITY, LONG-TERM HEALTH CARE AND SOCIAL SERVICES.
Program accomplishments
- RESEARCH - EACH YEAR AFTD INVESTS IN THE SCIENCE THAT WILL DRIVE DISCOVERY AND DEVELOPMENT OF ACCURATE DIAGNOSTICS AND THE FIRST THERAPEUTICS FOR FTD. TO THAT END, AFTD AWARDED EIGHT GRANTS DURING FY25, INCLUDING THREE PILOT GRANTS AWARDED THROUGH THE AFTD PATHWAYS FOR HOPE PILOT GRANT PROGRAM.AFTD DELIVERED THREE AWARDS THROUGH THE ACCELERATING DRUG DISCOVERY PROGRAM IN COLLABORATION WITH ADDF. DR. JEFFREY ROTHSTEIN OF JOHNS HOPKINS UNIVERSITY AND HIS TEAM WILL USE THE AWARD TO EVALUATE A NOVEL THERAPEUTIC TO CORRECT A PROBLEM AT THE HEART OF FTD ASSOCIATED WITH THE ACCUMULATION OF THE PROTEIN TDP-43.(CONTINUTED IN SCHEDULE O)AFTD AWARDED THREE HOLLOWAY POSTDOCTORAL FELLOWSHIPS - ONE TO A RESEARCHER WORKING ON A PROJECT TARGETING CONTRIBUTIONS TO WHITE MATTER HYPERINTENSITIES IN BAHAVIORAL VARIANT FTD, ANOTHER TO A RESEARCHER WORKING ON LEVERAGING A LARGE GRN FAMILY TO IDENTIFY RESILIENCE FACTORS IN FTD, AND THE LAST TO DEVELOP AN EDUCATIONAL SUPPORT GROUP PROGRAM FOR LATINO AND HISPANIC CAREGIVERS. AFTD ALSO AWARDED A CLINICAL RESEARCH TRAINING SCHOLARSHIP TO INVESTIGATE THE MOLECULAR ROLE OF SPECIFIC INCLUSIONS IN FTD-ALS, FUNDED THROUGH THE GENEROUS SUPPORT OF THE HOLLOWAY FAMILY FUND, WITH ADDITIONAL SUPPORT FROM THE AMERICAN BRAIN FOUNDATION IN COLLABORATION WITH THE AMERICAN ACADEMY OF NEUROLOGY.AFTD CONTINUED TO SUPPORT THE FTD DISORDERS REGISTRY, AN ELECTRONIC DATABASE THAT COLLECTS INFORMATION ABOUT THE FTD EXPERIENCE FROM PERSONS DIAGNOSED AND FTD CARE PARTNERS. THIS ESSENTIAL SOURCE OF FIRST-HAND ACCOUNTS WILL HELP INFORM RESEARCHERS AND CLINICIANS, AND WILL SPUR INNOVATION THAT WILL LEAD TO BETTER DIAGNOSES AND THERAPIES FOR PEOPLE LIVING WITH FTD. AT THE END OF FY25, 8,537 PEOPLE HAD JOINED THE REGISTRY.IN COLLABORATION WITH THE FTD DISORDERS REGISTRY, AFTD PRESENTED ONE PERSPECTIVES IN FTD RESEARCH WEBINAR ADDRESSING FTD RESEARCH 2024. IT WAS OUR MOST POPULAR WEBINAR FOR THE FY25 AND HAD A 63% ATTENDANCE RATE.Expenses $3,809,685 · grants $1,657,793 · revenue $439,004
- EDUCATION AND SUPPORTSUPPORT - AFTD UNDERSTANDS THE CHALLENGES THAT FTD PRESENTS TO PATIENTS AND THEIR FAMILIES, AND WORKS HARD TO DEVELOP UNIQUE RESOURCES AND INFORMATION THAT WILL IMPROVE QUALITY OF LIFE FOR THOSE LIVING WITH FTD. AFTD STAFF RESPONDED TO 4,203 HELPLINE INQUIRIES IN FY25, A 7 PERCENT INCREASE OVER FY24. AS OF JUNE 30, 2025, THERE ARE 118 AFTD-AFFILIATED SUPPORT GROUP FACILITATORS LEADING 98 GROUPS ACROSS THE UNITED STATES. AFTD AWARDED 659 COMSTOCK GRANTS (TRAVEL, RESPITE, AND QUALITY OF LIFE GRANTS) TO FTD CAREGIVERS AND PERSONS DIAGNOSED. EDUCATION AND INFORMATION -- AFTD COLLABORATES WITH A GROWING NUMBER OF PARTNERS EACH YEAR TO EDUCATE HEALTHCARE PROFESSIONALS ABOUT FTD, WITH A GOAL OF SPEEDING OUR WAY TOWARD ACCURATE DIAGNOSIS AND EFFECTIVE DISEASE MANAGEMENT AND TREATMENT. AFTD'S 2025 EDUCATION CONFERENCE, HELD IN PERSON IN DENVER AND ONLINE VIA LIVESTREAM, DREW 1,195 ATTENDEES COMBINED. THE CONFERENCE FEATURED EXPERTS FAMILIAR WITH FTD AND THE AFTD COMMUNITY TO COMPREHENSIVELY DISCUSS CONTENT PERTINENT TO PEOPLE LIVING WITH OR AFFECTED BY FTD, AS WELL AS HEALTHCARE PROFESSIONALS SEEKING GREATER UNDERSTANDING OF THIS DISEASE. AFTD OFFERED 10 EXPERT-LED EDUCATIONAL WEBINARS, INCLUDING ONE WITH THE FTD DISORDERS REGISTRY AND TWO WEBINARS THAT OFFERED CONTINUING EDUCATION CREDITS TO VIEWERS. AFTD ALSO PUBLISHED FOUR ISSUES OF THE PARTNERS IN FTD CARE NEWSLETTER FOR HEALTH PROFESSIONALS.Expenses $2,351,223 · grants $284,926 · revenue $2,068
- ADVOCACY AND AWARENESS - OUR COMMUNITY IS LEADING THE WAY TO SEND THE MESSAGE THAT DEMENTIA IS A MULTI-FACETED DISEASE THAT CAN OCCUR AT A YOUNG AGE AND BEGIN WITH SYMPTOMS UNRELATED TO MEMORY. AFTD IS WORKING HARD TO ENSURE THAT THIS MESSAGE IS HEARD IN WASHINGTON DC AND OTHER SEATS OF POWER, WHERE DECISIONS ABOUT RESEARCH FUNDING AND SERVICES ARE MADE. AFTD'S ADVOCACY ACTION CENTER MOBILIZES ADVOCATES ACROSS OUR COMMUNITY BY PROVIDING CLEAR GUIDANCE ON HOW TO TAKE ACTION IN SUPPORT OF LEGISLATIVE, POLICY, AND REGULATORY CHANGES TO IMPROVE QUALITY OF CARE AND QUALITY OF LIFE FOR PEOPLE WITH FTD AND THEIR FAMILIES. AS OF FY25, 2,259 INDIVIDUALS ARE RAISING THEIR VOICES THROUGH OUR ADVOCACY PLATFORM.Expenses $3,300,365
What it must file and when
IRS records say it files Form 990 or 990-EZ. Based on its last return; a smaller organization may file the 990-N. Its accounting year ends in June, so each return is due on the 15th day of the 5th month after that.
| Tax year | Year ended | Due | IRS public records |
|---|---|---|---|
| 2025 | June 30, 2026 | November 16, 2026 | Not due yet |
| 2024 | June 30, 2025 | November 17, 2025 | 990 on file |
| 2023 | June 30, 2024 | November 15, 2024 | 990 on file |
IRS record
- EIN
- 41-2073220
- Tax-exempt status
- 501(c)(3): Charitable, religious, educational or scientific organization
- Foundation status
- Publicly supported organization (170(b)(1)(A)(vi))
- Donations deductible (Pub 78)
- Public charity, 50% deduction limit
- Exempt since
- 2004
- Accounting year ends
- June
- Files
- Form 990 or 990-EZ
- Category (NTEE)
- Medical research (H124)
- Assets (IRS master file)
- $60,143,025
- Income (IRS master file)
- $24,754,249
Filing history
| Form | Year ended | Revenue | Expenses | Assets | Return |
|---|---|---|---|---|---|
| 990 | June 2025 | $14,420,554 | $11,559,795 | $60,143,025 | IRS |
| 990 | June 2024 | $13,139,120 | $11,526,939 | $53,971,673 | XML |
| 990 | June 2023 | $8,537,416 | $9,663,807 | $47,470,345 | IRS |
| 990 | June 2022 | – | – | – | IRS |
| 990 | June 2021 | – | – | – | IRS |
| 990 | June 2019 | – | – | – | IRS |
990-N: the IRS bulk file holds only the latest e-Postcard per organization; earlier years come from archived copies of that file since 2020 and can have gaps (the IRS e-Postcard search lists every one). 990, 990-EZ, 990-PF, 990-T: every e-filed return in the IRS e-file index since 2019; XML for the latest three processing years, amounts from the IRS Statistics of Income extracts before that. PDF copies and determination letters at the IRS (search EIN 41-2073220).
Questions about THE ASSOCIATION FOR FRONTOTEMPORAL DEGENERATION
- What is the EIN of THE ASSOCIATION FOR FRONTOTEMPORAL DEGENERATION?
- The employer identification number (EIN) of THE ASSOCIATION FOR FRONTOTEMPORAL DEGENERATION is 41-2073220.
- Is THE ASSOCIATION FOR FRONTOTEMPORAL DEGENERATION tax-exempt?
- Yes. The IRS lists it as tax-exempt under section 501(c)(3) since 2004.
- Are donations to THE ASSOCIATION FOR FRONTOTEMPORAL DEGENERATION tax-deductible?
- Yes. It is listed in IRS Publication 78 (Public charity, 50% deduction limit).
- Which annual return does THE ASSOCIATION FOR FRONTOTEMPORAL DEGENERATION file?
- Form 990 or 990-EZ. Based on its last return; a smaller organization may file the 990-N.
- When is the next return of THE ASSOCIATION FOR FRONTOTEMPORAL DEGENERATION due?
- The return for tax year 2025 (the year ending June 30, 2026) is due November 16, 2026. Form 8868 extends it by six months; the 990-N cannot be extended.
- When did THE ASSOCIATION FOR FRONTOTEMPORAL DEGENERATION last file with the IRS?
- The latest return in the IRS public files is the 990 for the year ended June 2025.
- Who is the principal officer of THE ASSOCIATION FOR FRONTOTEMPORAL DEGENERATION?
- The 990 for the year ended June 30, 2025 names SUSAN L-J DICKINSON.
- Who are the officers and directors of THE ASSOCIATION FOR FRONTOTEMPORAL DEGENERATION?
- The 990 for the year ended June 30, 2025 lists 29 people; 7 received compensation from the organization, the highest $320,026 (SUSAN L-J DICKINSON, CHIEF EXECUTIVE OFFICER).
- How much revenue does THE ASSOCIATION FOR FRONTOTEMPORAL DEGENERATION have?
- On its 990 for the year ended June 30, 2025 it reported revenue of $14,420,554, expenses of $11,559,795 and total assets of $60,143,025 at year end.
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